Clinical Trials Logo

Clinical Trial Summary

Marfan syndrome (MFS) is a rare genetic disease (1/5000) characterized by the association of ocular impairment, cardiovascular disease and musculoskeletal disease. In some chronic conditions, physical activity and training have been shown to be effective in improving muscle strength and functional abilities but also fatigue and quality of life. We hypothesize that the implementation of a personalized exercise rehabilitation program (Personalized Training Program) in children and young adults with MFS, by improving muscle mass, physical endurance, muscle strength, bone mass and quality of life of these patients. In order to test this hypothesis, investigators wish to carry out an interventional, prospective, monocentric study for the first time in children and young adults (<25 years old) presenting an MFS.


Clinical Trial Description

Marfan syndrome (MFS) is a rare genetic disease (1/5000) characterized by the association of ocular impairment, cardiovascular disease and musculoskeletal disease. Chronic fatigue and decreased physical endurance are almost constant complaints of patients with MFS (90% according to some studies), and have an impact on activities of daily living and quality of life. The fragility of the connective tissues and the muscle deficit, responsible for increased stress on the musculoskeletal system, may be involved in this symptomatology. This deficiency in muscle mass is already present in young children and worsens in adolescents and young adults, as researchers have shown in a clinical study carried out in the Toulouse MFS competence center. This muscle deficit may also explain, at least in part, the deficit in bone mass observed in children and adults. In some chronic conditions, physical activity and training have been shown to be effective in improving muscle strength and functional abilities but also fatigue and quality of life. Investigators hypothesize that the implementation of a personalized exercise rehabilitation program (Personalized Training Program) in children and young adults with MFS, by improving muscle mass, physical endurance, muscle strength, bone mass and quality of life of these patients. In order to test this hypothesis, investigators wish to carry out an interventional, prospective, monocentric study for the first time in children and young adults (<25 years old) presenting an MFS. ;


Study Design


Related Conditions & MeSH terms


NCT number NCT03236571
Study type Interventional
Source University Hospital, Toulouse
Contact
Status Completed
Phase N/A
Start date July 24, 2018
Completion date June 21, 2022

See also
  Status Clinical Trial Phase
Terminated NCT00763893 - Study of the Efficacy of Losartan on Aortic Dilatation in Patients With Marfan Syndrome Phase 3
Recruiting NCT05809323 - Marfan Syndrome Moderate Exercise Trial II N/A
Completed NCT04776668 - Living With Marfan Syndrome and Your Aorta
Recruiting NCT01949233 - The Oxford Marfan Trial Phase 2
Active, not recruiting NCT01145612 - Atenolol Versus Losartan in the Prevention of Progressive Dilation of the Aorta in Marfan Syndrome Phase 3
Completed NCT00723801 - Effects of Losartan Versus Atenolol on Aortic and Cardiac Muscle Stiffness in Adults With Marfan Syndrome Phase 3
Completed NCT04641325 - Marfan Syndrome Moderate Exercise Pilot N/A
Recruiting NCT06257004 - Genome-wide Epistasis for Cardiovascular Severity in Marfan Study
Completed NCT01322165 - National Registry of Genetically Triggered Thoracic Aortic Aneurysms and Cardiovascular Conditions N/A
Recruiting NCT05700175 - Transcriptomic Study of Adult Population With Marfan Syndrome
Completed NCT00782327 - Randomized, Double-blind Study for the Evaluation of the Effect of Losartan Versus Placebo on Aortic Root Dilatation in Patients With Marfan Syndrome Under Treatment With Beta-blockers Phase 3
Not yet recruiting NCT05838235 - Adapted Physical Activity Program (APA) for Effort Rehabilitation of Children and Teenagers With Marfan Syndrome N/A
Recruiting NCT02148900 - Development of a Blood Test for Marfan Syndrome N/A
Active, not recruiting NCT05980104 - Single-Session "Empowered Relief" Class for Marfan Syndrome and Related Conditions N/A
Recruiting NCT02050113 - Complex Aortic Aneurysm Repair Using Physician Modified Endografts and Custom Made Devices N/A
Completed NCT00001641 - Study of Heritable Connective Tissue Disorders N/A
Completed NCT01715207 - Comparison Study of the Effect of Aliskiren Versus Negative Controls on Aortic Stiffness in Patients With Marfan Syndrome Under Treatment With Atenolol Phase 3
Completed NCT05516043 - Safety and Performance of POLYTHESE® Vascular Prosthesis
Recruiting NCT04776681 - Living With Marfans and Your Aorta: Surgical Outcomes Study
Recruiting NCT00683124 - Nebivolol Versus Losartan Versus Nebivolol+Losartan Against Aortic Root Dilation in Genotyped Marfan Patients Phase 3